-
Charles replied to the topic Using supplemental oxygen in the forum Diagnosis Information and General Questions 1 week, 1 day ago
I use and have been using supplemental oxygen for about four years now. When i go shopping i take my portable unit. I start at 2L but usually have to move it to 4 or 5 as the shopping continues. Anywhere between 2 to 3 hours. When i am back in the car to go home, i start backing it up to eventually get to my original 2L. If i didn’t take my…[Read more]
-
Charles replied to the topic Questions about Ofev in the forum Using Our Forums 2 weeks, 3 days ago
Hi Maria. First, and not trying to be negative, but there isn’t a pulmonologist that is worth their salt. A good one is as elusive as the correct spelling of the word pulmonologist. Can’t even find a correct spelling for it in a dictionary or even spellcheck. For what ever the reason they are not up on the many different things that are out there…[Read more]
-
Charles replied to the topic Oxygen Delivery System when needs go up in the forum Diagnosis Information and General Questions 4 weeks, 1 day ago
Robert, just about everything that you have described about your mother is pretty much in line with this shit disease, IPF. Have you tried the med, OFEV? It does not cure, but it is suppose to prolong the inevitable. I was diagnosed in late 2013 and am still huffing and puffing my way through life. I really believe that the OFEV has given me some…[Read more]
-
Charles replied to the topic Hello from the UK in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 1 week ago
GO GIRL GO! Get crackin and find a cure for all of us. chuck
-
Charles replied to the topic Cost of Ofev in the forum Ofev (Nintedanib) 1 month, 3 weeks ago
Hi GratefulDeb.
Try Boehringer Ingelheim They have a “BI Cares Patient Assistance Program” for OFEV. PO BOX 5637 Louisville KY 40255. Phone number is 1 855 297 5906 or fax number 1 855 297 5907. They are great people there. I have been on their program for years. Just need to renew annually. I am on social Security and qualify for the OFEV at no…[Read more] -
Charles replied to the topic Deep Tissue (or red light) Laser Therapy in the forum Using Our Forums 2 months ago
Thanks Rhonda for your input. I see my Pulmonologist tomorrow (Friday) and will ask her about the laser stuff. Chuck
-
Charles replied to the topic Deep Tissue (or red light) Laser Therapy in the forum Using Our Forums 2 months ago
Hi ya’ll, My nephew has found a Quinear at the Sinoriko store that has a Red Light therapy device and it reads 13 pcs X 650n power +4 timer that’s handheld. Does that sound like what you all are talking about?
Chuck -
Charles replied to the topic Life span in the forum Diagnosis Information and General Questions 2 months, 1 week ago
I am Chuck and i was diagnosed in 2013. I am 81 in 5 days. I have been on OFEV for the last 5 years or so and really believe that it has been very helpful. Hope that this helps.
-
Charles replied to the topic Sandy Graham in the forum In Loving Memory 3 months, 3 weeks ago
Sorry for the loss. I am not far from that myself. Hope she went peacefully.
Chuck Gerson -
Charles replied to the topic Protecting Your Lungs From Cold Temperatures in the forum Canadians Living with Pulmonary Fibrosis 4 months ago
Fortunately i don’t live where there is temperatures like that. But it does get cold. When i get into any type of chilly temps i start coughing a lot. Does anyone have that problem and if so, any antidote for it? Chuck Gerson from Cambria Ca.
-
Charles replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 4 months, 2 weeks ago
Hi ya’ll, it’s Chuck again. 11/15/22 I had read that article from Cedar Sinai about 3 or 4 months ago when it had come out. I started taking 25 mg since then and still do. I personally do not see any chance, but a recent ct scan showed very little progress of my IPF, which by the way i was detected in late 2013. My pulmonologist has no opinion on…[Read more]
-
Charles replied to the topic Life span in the forum Diagnosis Information and General Questions 5 months ago
Hi to everyone. I was originally going to reply to Pam at the very top, but after reading so many of these remarks, i guess what i have to say is for all of you die hards. (Pardon the pun!) I was diagnosed in late 2013 and was told the same as you all have been told, or if you are from the south, ya’ll have been told. 3-5 years. I lived at 6000…[Read more]
-
Charles replied to the topic Leaving the house on 4LPM oxygen? in the forum Diagnosis Information and General Questions 5 months, 3 weeks ago
Natalie, there is a company called “SupercareHealth”. 1 800 206 4880. They have a 5 hour portable but only lasts for a couple of hours while on five, they also have a portable that goes to four and can last for six to eight hours. Give them a call. I think that they are all over the USA. Chuck Gerson
-
Charles replied to the topic Medications Making Me Feel Worse – Is It Possible? in the forum Diagnosis Information and General Questions 6 months ago
There was an article from Cedar Sinai hospital saying that using ZINC was very good. So i have started it at 25 mg per day and i seem to be doing a little worse. Anyone aware of this?
Chuck -
Charles replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 7 months ago
Hi ya’ll, it is Chuck. For some reason i have not been receiving any of all this conversation for a month or more. I don’t know why! However, i did see a new Pulmonologist and asked her about the Cedar Sinai material also she had me do a CT and she never got back to me. I called the office a couple of times and left a message but never heard back.…[Read more]
-
Charles replied to the topic Relative LPM on pulse oxygen concentrators in the forum Join the Discussion: Welcome to all PF/IPF Patients 8 months, 1 week ago
Well hi to all of you who are having all of these problems. I to can join in with all of my heart and brain. First let me address the doctors portion of questioning. There is no one doctor who knows what to do or how to do it. They all differ and that is a real shame. What i have just said is of no help breathing but it may help you understand…[Read more]
-
Charles replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 8 months, 3 weeks ago
Hi guys! Chuck here with questions and some information. First the question is, if the conclusion from the Cedar Sinai says that there is a reduction in our IFP, then why are the few people above saying that they have been taking Zinc for years and do not see any change? I am very familiar with Cedar Sinai and respect them a lot. So can anyone…[Read more]
-
Charles replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 8 months, 4 weeks ago
Hi you all, Chuck here. As i had told you, i was to see my pulmonologist on June 30th. She was not that familiar with Zinc, so i gave her all of the information that i have read here on this site by ya’ll and what my GP had to say as well. She said that she will look into it and get back to me ASAP. You know, the usual runaround. :-} I see my GP…[Read more]
-
Charles replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 9 months ago
Hi Millie and the gang. First let me correct something. I said Friday the 30th in my past onslaught of words. I meant Thursday the 30th. That said, i started taking the 50 mg of zinc and it has been 5 days now. So far i don’t feel any different. Possibly a little more thirsty, but that is the only change that i have noticed. Again, it’s only been…[Read more]
-
Charles replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 9 months, 1 week ago
Millie, you think that you are confused, read all of the above articles and you will find no two are alike. However, as Kitty has said, my GP doctor has also said that 11 mg is about correct for us men because of the possible side effects. So i not only questioned her, i also told her that most everyone on this site is taking 30/40 mg per day. So…[Read more]
- Load More